Independent Living Fund letter
Thousands of disabled people rely on funding from the Independent Living
Fund to enable them to live independently with choice and control over their
lives. ILF users have been left shocked and extremely anxious since it was
announced in 2010 that it would be closed down by government in 2015.
Already closed to new applicants since May 2010 this decision was taken with
no evidence of an equality impact assessment having taken place nor any
consultation carried out with current and potential beneficiaries of the fund.
“The Independent Living Fund is a ring fenced resource, for a priority group
of disabled people with high support needs that can provide a better lifestyle
and outcomes for service users whose full needs would not be met by local
authority funding. “
The Local Authorities have had their resources severely reduced and
therefore now only provide basic personal care. Without this extra funding ILF
user’s only options will be placement in residential care or more
responsibilities being placed on already over stretched family carers, that’s if
the disabled person has family support.
Either option will have huge cost implications to government as residential
care costs far more than assisting a disabled person to stay in the community
and family carers would have to leave employment and manage on very low
Carers Allowance and other benefits.
Since 2010 the Minister for Disabled people, Maria Miller, has assured users
we would be consulted on this issue initially in 2010 then early 2011, but as
users of the ILF fund we have heard nothing since. Maria Miller issued a
speedy statement (5th December) saying that ILF will be discussed in Spring
2012 in context of the reform of the Care and Support system- Yet, ILF is too
important to be discussed as a side issue-as of 7th December this has not
been sent to ILF users themselves.
Leaving severely disabled people in such anxiety over their lives is violating
our human rights to be involved in decisions that may affect us and indicates
a total ignorance of how important this funding is for severely disabled people
to live with some quality of life.
The United Nations Convention on the Rights of Persons with Disabilities and
in particular
Article 19: “Living independently and being included in the community”,
states that “disabled people have a right to live in the community; with
the support they need and can make choices like other people do”.
It also says they should be included in things that other people in the
community do. Countries, like the UK, who agree to the rights, have to make
this happen. Two of the things they must do are:
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Make sure that disabled people get the help they need to live in the
community, this means things like getting personal assistance
Make sure that disabled people can choose to do things in the
community along with other people
Article 4 states; the general obligation on government to consult with
disabled people, before not after decisions or policies are changed.
Article 17 states; we are to be treated with inherent dignity
In addition, the United Nations International Covenant on Economic, Social
and Cultural Rights (CESCR) states that we have the right to enjoy the
highest attainable standard of physical and mental health and the right
to an adequate standard of living. The UK has a duty to work progressively,
to the maximum extent of its available resources, to deliver these rights even
in a period of economic downturn.
The changes in the ILF priority system have obvious implications for the UK’s
chances of meeting all such obligations, in terms of the resources available to
do so as well as in the actual delivery of them e.g. ILF offers disabled people
the flexibility to “choose to do things in the community”.
We have heard ministers state that funding disabled people is ‘unsustainable’
yet we see millions of pounds ‘found’ to fund whatever programs the
government finds politically appropriate yet not severely disabled people?
We ask that the government continues to provide care and support for
those with the most complex needs via the ILF.
The Independent Living Fund must be retained and reopened to new
applicants with adequate funding for this.
It should not be restricted to only those in employment as this means
those who cannot sustain paid work, but can contribute to society in
others ways, will be unable to participate in their communities, families
or faith activities.
The funding must NOT be given to local authorities; it is meant to meet
the needs of severely disabled people which means that there may be
more in one region compared to another. Also the LA will use the
funding as they wish, it will not be ring fenced, and we suspect it will not
be directed appropriately for the particular disabled people it is meant
for.
We wish to have input into the design of the consultation process and
assurances that the 23,000 already in receipt of ILF will be assured of
continued funding.
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We the undersigned believe this arbitrary decision to close the ILF
without assessing the impact this will have on current and potential
users, and without consultation, violates the Human Rights of disabled
people who depend on ILF to live.
Cases that give examples of impact of losing or not getting ILF
A – 55 year old lady has 35 hrs allocated from LA and 36 hrs from ILF per
week, if she loses the ILF and the LA does not find funds to continue support
she will lose the following aspects of her life; Volunteering, faith activities,
visiting grandchildren, unable to get out of home, do her own shopping, no
social activities, trapped. She was awarded an MBE by the Queen this year
2011 for her initiatives raising awareness of disability hate crime and helping
disabled peoples organisations, all such activities will cease with no ILF
funding. She feels her life will have no purpose if she loses the support ILF
gives.
B – “My Son's care package comes to over £50,000 per year of which the ILF
package makes up over £23,000. The Local Authorities "Indicative Budget"
maximum level for someone living at home is £31,094 so without ILF his total
care package would be slashed by almost 50% and leave it impossible for him to
manage to live at home”.
C - 25 year old man with ILF funding has been able to live independently for 7
years and get a 2:1 in Politics and International Relations plus an MA with merit
in Journalism. As part of his degree course he spent almost a year working
unpaid as a senior researcher for an MP. He has also worked on a self-employed
basis and is now working in the media industry, in spite of being placed in the
Support group for ESA previously due to his physical limitations. Without ILF
funding none of this would have been possible and he would not be contributing
to the economy as he is now doing. He would never have had the chance to go to
university like his peers and would no doubt instead be incarcerated and
abandoned by society in a residential care home costing the taxpayer much
more.
D - “As half my care package is ILF I would first have no control over my toilet
needs, this may result in me being catheterised. I am not unable to get out of bed
or in bed myself, nor can I dress myself. I need support in all personal care
needs, including keeping clean etc. I would not be able to attend any meetings
when various government and NGOs ask me to be part of their various
consultation plans. I would have no control over what time I got up or what time I
went to bed therefore I would have no social life whatsoever. When ILF finishes
in 2015 I will not have any social life. This will mean I will not be able to visit
friends, attend the cinema or theatre, go to my bridge club or attend a primary
school to assist children to read. I will no longer be able to use my car for
shopping taking my dog to the woods etc. Having campaigned for the last 26
years this will end as I need support to do this. I regularly attend course on
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photography and employment issues – these will not be possible without ILF
funding.”
E. “I am 27 years old female, and I currently live in my own flat, with 24 hour
PA's who I have directly employed. I have had various levels of funding from ILF,
ever since becoming an adult. It has meant that I was able to live on campus at
the University of Warwick, where I completed a BA in History and an MA in
Modern British History. I was then forced to move back to my family home,
because I did not have the high level of support that I need, and I have only
recently been able to start living independently in the community, with funding
from my local authority and ILF. This amount was not as much as would have
previously been the case because a freeze was put on the amount that they, ILF,
could contribute to disabled people’s care packages in April last year, before my
current care package was agreed. As a result, I was only entitled to receive the
same level of funding that I had been awarded in my previous, much less
expensive, care package. This meant that my local authority was put under
increased pressure to fund my entire care package, and after the ILF is
abolished, it seems very likely that all local authorities will find it difficult to provide
care for severely disabled people living in the community. I have had to really
fight against my local County Council in order to get funding for my current care
package, but what scares me is that although I will always be disabled (and
actually, my needs will increase in time), there is no kind of guarantee that I will
receive my current care package even past my next review. "
F. I am a 44 year old digital artist/editor & film maker, a lot of time is spent
travelling to locations for shoots, I can't imagine how I would manage without
ILF which funds a third of my care package.. to lose such vital funding will
probably change my life in a way presently I do not want to think about,
however, as the government is pushing this legislation through regardless, I
have to consider my position. Ultimately I fear that any real & significant
control in my life and how I presently choose to live my life will be significantly
curtailed. I know in this present political climate, any changes will be
presented to the general public in a way that suggests no "significant" change,
"the disabled" are worrying needlessly etc, but the reality has to be heard. I
will have to make my PA’s redundant, relying on goodwill of friends or
volunteers would not be feasible. I would lose control of my life.
H. I am a 40 year old ex archaeologist, living in busy East London, and it would
be impossible to manage if I lost my ILF. This funds 50% of my care package, so
the loss of ILF would mean that I would lose my independence. At the moment I
live independently and use my ILF to maximise my independence, to access the
community, to do voluntary work in three different places. This government has
pushed legislation through in a way which challenges human rights. Without ILF I
would lose my home and my independence and would be forced to rely on my
aged father and sleep on his floor as his house is inaccessible.
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I. I am 39 years old and my ILF contributes roughly 25% to my 24/7 package.
It is thanks to the ILF that I have been able to study at University, become
involved in voluntary work and, more recently, have been able to hold down a
full time job in a disability organisation, helping other people make the most of
their care packages. The ILF has allowed me to contribute financially to the
economy yet there are many more people who, thanks to the ILF have made
contributions to society that are every bit as important, and often times more,
than my one contribution. In a time where disabled people are classed as
undeserving scroungers it is vital to point out these invaluable contributions
and also to not that, without ring-fenced funding that affords people more than
survival care we will be forced into a position were we can’t give back to
society. I have already seen this in my line of work where people who would
have benefited so much from funding from the ILF are just left with a couple of
visits a day – literally for “feeding, watering and toileting” – of course there is
no willingness by Social service to put that extra little bit in any more, as they
know that the ILF won’t be there to part fund! This is a real disgrace.
Personally, any negative change to my care package will have not only a
severe affect on me, but also on the 6 people that I employ as Personal
Assistants. The loss of the ILF really is a return to the dark ages!
ILF Users 27
Anne Novis MBE, ILF user
Anne Pridmore – ILF user and director ‘Being the Boss’
Andrew Hardy, ILF user
Brian Hilton, ILf user
Cath Gibson, ILF user
Francesca Digiorgio – ILF User
Gabrielle Pepper – ILF user
Glynis Dawes – ILF user
Ian Burnip- ILF user
Jenny Hurst – ILF user
Katherine Arienello – ILF user
Kevin Caulfield – ILF user
Laurence Clark - ILF user, Comedian and Writer
Liz Carr – ILF user, comedian and broadcaster
Lucy Trengrove – ILF user
Mark Williams – ILF user and DEF Co Chair
Natalie Meadows – ILF user
Nicki Myers – ILF user
Noor Homayoun – ILF user
Peergawsan Lotun – ILF User
P.J. Banyard MA (cantab) - ex CEO international Spinal Research trust, ILF
user
Penny Pepper – ILF user
Roxanne Homayoun- ILF user
Ruth Bashall – ILF user
Sean Mc Govern – ILF user
Sue Elsegood – ILF user
Terry Egan – ILF user
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Parents of ILF users - 10
Barbara Horsewood – Mother of ILF user
Kay Raisey
Linda Burnip- disabled mother of ILF user
Pam Robinson – mother of ILF user
Paul Taylforth – parent of ILF user
Rebecca Trengrove
Rosemary Homayoun
Dr Saddi Chillingworth -Parent of ILF user
Tracey Hattley
Tricia Tsatsoulis
Disability Organisations – 44, 1 possible
Age UK - Mary Cox
Alliance for Inclusive Education – CEO Tara Flood
Atos Victims Group - Paul Smith
After Atos ‘Counting the Disabled Back In’ – K. James/J.Knight
Being the Boss - Sheila Blair
Black Triangle Campaign Broken of Britain - Kaliya Franklin
Carer Watch - Rosemary O’Neill
Chester Adult Phab Social Club – Chair person Lynda Hesketh
Choices and Rights Coallition – Chair Mark Baggley
Disability Cornwall and Isles of Scilly - Theo Blackmore
Disability Equality Forum Bristol
Disability Hate Crime Network – Coordinator, Stephen Brookes MBE
Disabilty Wales – Chief Executive, Rhian Davies
DPAC - Disabled Peoples against the Cuts
DPAC Islington – Julia Cameron
DPAC Lambeth, Roger Lewis
DPAC, Brighton, Jill Goble
DPAC, Chester - Lynda Hesketh
Expertise Centre Independent Living – Peter Lambreghts
GAD -Greenwich Association of Disabled People - CEO, Joanne Munn
Green Party Trade Union Group – Alan Wheatley Disability Spokesperson
Hammersmith and Fulham Coalition against Community Care Cuts - HAFCAC
Inclusion London - Chair, Kirsten Hearn, CEO Tracey Lizard
Inclusion Scotland - Manager, Bill Scott
Kensington Centre for Independent Living - CEO, Theo Harris
Kingston Carers Network – Director, Kate Dudley
Limbcare - Gordon McFadden, Chief Officer of Policy, CEO and Chair, Ray
Edwards MBE
Norfolk Coalition of Disabled People - CEO, Mark Harrison
North Edinburgh Fights Back
National Centre for Independent Living, NCIL - CEO Sue Bott
Ouch Too online disabled peoples organisation
Public and Commercial Services Union (PCS) at the ILF – Branch Secretary,
Paul Martin
Remploy Trade Union National Convener - Les Woodward
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Shaping Our Lives – Chair, Professor Peter Beresford OBE, Brunel University
Social Work Action Network London – Dan Morton, Rich Moth Deputy
National Convenor
The Forgotten Heroes – Trustee, Charley Downey
United Kingdom Disabled Peoples Council- UKDPC – CEO, Jaspal Dhani
Voice UK – CEO Kathryn Stone OBE C. Dir FLoD
Wales Campaign for Fair Society – Chair, Paul Swann
West Norfolk Disability Information service
Wheels in Motion, Birmingham - Tracy Veck
Where’s the Benefit
Wiltshire CIL – Director, Geraldine Bentley
York Independent Living Network - Lyn Jeffries
European/national Organisations - 4
European Network of Independent Living (ENIL) – Exc.Dir.Jamie Boiling
Independent Living Slovenia – Elena Pecaric
Kapka Panayotova CIL – Sofia, BULGARIA CEO
YHD – Association for Theory for Theory and culture of Handicapped,
Slovenia – Klaudija Poropat President
Disabled Academics - 3
Colin Barnes, Professor of Disability Studies, University of Leeds.
Jenny Slater, Manchester Metropolitan University
Professor Peter Beresford OBE, Brunel University
Disabled People - 125
Adam Lotun
Ahmed Bagi
Alan Holdsworth
Alan Wheatley
Alec Middleton
Alice Wedderburn
Annie Wiltcher
7
Beverley Smith
Bill Cox
Bill Scott
Bob Williams-Findlay - former Chair of British Council of Disabled People
4
Charlotte Pearson
Charley Downey
Chris Walsh
Cindy Albright
Coover Mistry - member of KCIL
Craig Lundie
6
D.H.Kelly
Danka Gordon
Dave Stamp
7
David Bridge
David Churchley
David Gillon, Disability Rights Activist and Blogger
Deborah Williams
Diana Harrison
Debbie Jolly
Diane Harrison
Dora Kostiuk
11
Elysabeth McCaig-Scot
Elane Heffeman
2
Fred Williams – excluded from ILF
1
Gabriel Pepper
Gail Ward
Geraldine Bentley – Wiltshire CIL
George Lamb
Gordon McFadden
5
Holly Meiszner
1
Jamie Boiling
Jan Turner – excluded from ILF
Jaspal Dhani
Jill Goble
Joanne Hayes
Joanna Munn
John James McCardale
John Kelly
John McGovern
John Newman
Jonathan Lee
Jonathan Toye
Judith Bond
Julia Cameron
June Knight
15
Kay Trujillo
Karen James
Karen Pointin
Kate Robinson
Kaliya Franklin
Kenneth Hill
Kevin James
Kev Towner
Kirsten Hearn
Klaudija Poropat
10
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Laurence Robb - MS Research, and standup4MS.blogspot.com- excluded
from ILF
Les Woodward
Lindsay Lotun
Lisa Egan – disabled daughter of ILF user
Liz Silver
Lydia J. Roe
Lyn Jeffries
Lynda Hesketh– excluded from ILF
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Magg Lauppen
Mark Baggley
Mark Harrison
Mark Newman
Mark Wilson
Mathew Wheatley
Mary Fox
Melanie Banton – Executive assistant, Council of Disabled people,
Warwickshire and Coventry
Moira M Smith
9
Naomi Jacobs
Nirmala.G.Jivan
Neil Fergusan
3
Paul Martin - PCS at ILF, Branch Secretary
Pat Onions disabled person and carer
Paul Smith
Paul Swann
Paul Talforth
Pauline Latchem
Penny Goring
Peter John Farrington
Peter Lambreghts
Peter Lockheart
Phil Lockwood
Phillipa Willitts
12
Rachel Huskisson
Ray Edwards MBE
Rhian Davies – Chief executive, Disability Wales
Rhys Handley
Robin Bray- Hurran
Roger Lewis
Rosena McKeown
Rosemary O’Neil
8
Sarah Coleman – Volunteer coordinator GAD CIL
Sarah Simpson
Sasha Callaghan – Past President University and College Union
9
Sedley Bryden
Sheila Blair
Sophie Partridge
Stacy Hoare
Stephen Brookes MBE – Coordinator DHCN
Stephen Hodgekins
Sue Bott – CEO NCIL
Sue Fortune
Sue Marsh
12
Tanya Doolin
Tara Flood OBE- CEO ALFIE
Theo Blackmore Theo Harris
Tina Coleman – mental health activist
Tracey Lizard
Tracey Veck
7
Vivienne Heuerman
1
Willow Jacky – Carer and disabled person
1
Zoubeidah Lotun
1
Family Carers/Personal Assistants – 17
Alicia Walker
Gemma Novis
Jacqui Armston
Jane Blake
Jean Milne
John R Caley
Jonathan Novis
Laura McKenna
Linda Dickenson
Marion Beazley
Nicole Bilsen
Simone Meiszner
Terrine Johnson
Trev Burnip
Veronica Birley
Wendy Mortimer
Vin West - unpaid Carer for ILF User and member of Wales Association for
Citizen Directed Support
Other supporters – 18
Alan Hunt – Access officer, Pembrokeshire County Council
10
André Keil
Dan Morton - SWAN
David Robertson Support Worker (Recovery Across Mental Health)
Dr Alison Wilde
Gordon Eagling
Jon Staley – Support Worker & Trainer
Kate Dudley – Kingston Carers network
Kathryn Stone MBE – Director Voice UK
Linda Lawty – Senior Advocate People First Cumbria
Linzi Calvert
Lyn Whiteside BSc(hons) SRN
Natalya Dell
Cllr Roger Robinson- Camden Council;Chair- Camden Council’s Disability
Scrutiny Panel &former CEO-Artsline
Rich Moth – Deputy National Convenor SWAN
Shaaba Lotun
Tansy Feltis
Tehya Lotun
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